Some of you know that in August 1996, between taking the bar exam and starting work as an attorney, I spent about three-and-a-half weeks in India. It was supposed to be a six-week trip, but I got extremely sick about three weeks in and had to cut my trip short. I wasn’t sure what was wrong with me at the time, but I had lost 18 pounds in three-and-a-half weeks, my skin was jaundiced, my eyes were bloodshot all of the time, I was having some digestive issues, and I was having what I will call “mental issues” – basically I didn’t know where I was.
When I finally realized I was having a problem more serious than just your normal travel sickness issues, I kind of “came to” at a place called Dal Lake near Srinigar, Kashmir. The one place I knew i wasn’t supposed to go when I started my trip – there were U.S. State Department advisories against it, etc. – was Kashmir – as it is a separatist region that was (and still is) the subject of a dispute between India and Pakistan. I have a vague recollection of passing through military checkpoints and the soldiers asking me where I was going and why. (I also have a vague recollection – which happens to be supported by some photos I took – of my taxi driver on the way to Srinigar pulling over on the side of the road and showing me an entire, farm-sized field of marijuana.)
Anyway, if I remember correctly – and if my mother recalls this differently I will defer to her memory and update this later – when I realized something was seriously wrong with me, I made it to a phone in Srinigar, called my mother back home in Georgia, and told her I was very sick. I believe she later told me that she could immediately tell something was wrong with me – I didn’t sound like myself, seemed confused, etc. She told me I needed to come home and asked me where the nearest international airport was. I told her it was in New Delhi, but that: (a) there wasn’t another bus back to New Delhi for two weeks (that doesn’t sound right to me now, but that’s the way I remember it; also, Srinigar is very remote, so I guess that could be possible); and (b) that my flight back to the U.S. was out of Mumbai (Bombay), not New Delhi, as I had flown into Mumbai.
Again, if I remember correctly, my mother told me that she didn’t care how much it cost for me to take a taxi to New Delhi, but I needed to get there as soon as possible, and that she didn’t care how much it would cost me to move my flight up and fly out of New Delhi vs. Mumbai, as I just needed to get home. I think the taxi ended up costing several hundred dollars and I have no idea what happened regarding changing my flight. My mother later told me that when we hung up the phone she started crying because she had just gotten a call from her son who was in some godforsaken place literally around the world and something was obviously wrong with him – she truly didn’t know if she’d ever hear from me again.
So I made it to New Delhi and then flew back to Portland, Oregon, where I was living at the time. I spent a few days in Portland before I flew back to Georgia, and after eating normal food again, resting, etc., I had started to feel a lot better, had gained some of my weight back, was looking better, etc. So – and this is unbelievable to me now – I never even went to the doctor when I got home. I don’t really remember what I thought at the time, but looking back I can only guess that I just figured I had gotten really sick from eating something bad, but that I’d gotten over it and would be fine.
But I wasn’t fine. I was having serious memory issues – I basically couldn’t remember anything on a short-term basis and my long-term memory was more fuzzy than usual too. The closer in time my memories got to my trip to India – both before I left to go there and after I got back – the less I could remember. I also couldn’t remember things in “real time.” I have always had a very good memory and could always remember people’s names, telephone numbers, etc. After getting back from India, I found that I had to write a lot of things down if I was to have any hope of remembering them, etc. I was also having some serious digestive issues that I won’t go into detail about here – and you really should thank me for that, I assure you – let’s just say they were serious. I attributed those to whatever I had eaten over there and I just thought they would get better over time. (Also, to be completely frank, i was 25-years-old at the time, the product of an upbringing in the rural Bible Belt south, and was embarrassed to go to the doctor and tell him or her that I was having digestive issues. as silly as that may sound.)
In the midst of all of this, I started working as an attorney for a firm in Tacoma, Washington (I later – and actually as quickly as I could – transferred from the firm’s Tacoma office to its Seattle office). Starting to work as an attorney in a “big law firm” environment with the associated hours, stresses, etc., is stressful for anyone, and being that I was in the midst of fighting off whatever I was fighting off, it was doubly stressful for me. Here are a couple of weird things that were going on at the time: First, I was having auditory hallucinations. I would be sitting at my desk in my office and I would start to hear music playing. And I don’t mean like in my head – like if I say think of the song “Jingle Bells” you can kind of hear it in your mind. I mean I could literally hear music playing to the point where I was opening my drawers to check if there was a radio or tape player in my desk. I couldn’t tell you what the music was – it was kind of random and unspecified, but I could definitely “hear” it.
Second, and this was infinitely more disturbing to me at the time, I would have these deja vu experiences that were so overwhelming I would throw up. I would be somewhere, say sitting at my desk, and all of a sudden this wave of weirdness would come over me – I would feel like I had been in that exact moment before. That coffee mug was sitting right there. And that pen was sitting right there. And I just got off of the phone with whatever partner or client was hounding me for something, etc. And then – here is the really weird part – I would say to myself “And Tim Ashcraft is about to walk through that door.” And then Tim Ashcraft, who was an associate I worked with, walked through my door – and I had to get up, excuse myself, and go to the bathroom to throw up.
I know that sounds incredibly weird – and I don’t think I’m psychic or something, but I swear that would happen. I recall that specific incident with Tim Ashcraft coming through my door, but there were numerous other instances in different circumstances where the same kind of thing happened. My best guess – after dwelling on it for 11 years now – is that because of what I’m about to tell you happened to my brain, there was some sort of time disconnect between when my senses observed certain things and when those things were processed by my brain. In other words, at the time I said to myself “And Tim Ashcraft is about to walk through that door,” Tim had actually already walked through the door – my eyes had seen it, and I knew it had happened on some level, but it somehow hadn’t reached my conscious mind yet. So when I then “saw” him walk through the door, for some reason a wave of nausea would overwhelm me and I would have to go throw up. (Even today, every now and then, I will still get a very strong sense of deja vu, and even a twinge of the nauseated feeling, but I haven’t thrown up because of it for a long time.)
So anyway, I was struggling along with all of those issues, still – incredibly – had not gone to a doctor, and it was about 5 or 6 months after I got back from India. I was talking on the phone to my ex-girlfriend from Portland, Alexis, who had moved back to her hometown of Memphis, Tennessee at the same time I moved to Tacoma, and we had the following conversation:
Me: What are you doing this weekend.
Alexis: I think Lori and I are going to go to a party Saturday night.
Me: Who’s Lori?
Alexis: You know, Lori. My best friend here.
Me: Oh yeah. (Pretending to remember even though I didn’t.)
Me: Have I ever met her?
Alexis: Henry, she spent ten days with me in Portland this summer. We hung out with you almost every day she was there.
Me: Hmm, I don’t remember.
Alexis: Henry, the three of us went on a three-day rafting trip on the Deschutes River.
Me: Hmm, I don’t remember.
Alexis: You have lost your [expletive] mind. You need to go to the doctor.
After many conversations like that with Alexis, I decided to finally go to the doctor. So I set up an appointment through my managed care provider or whatever, and the physician’s assistant I first met with immediately referred me to a neurologist. I ended up having to go in several times and had multiple MRIs, EEGs, sleep-deprived EEGs, etc., performed.
After I had my first MRI done, the neurologist came into the examination room where I was hanging out and asked me to come with him into the radiology room or whatever the room where they look at the MRI scans up on the lit screens is called. I went in there, and there were these x-ray looking scans of my skull and brain up on the screens. (I still have a copy of one of them somewhere.) The doctor – who didn’t exactly have a lot of “bedside manner” – pointed to some blurry gray areas around the outside edge of my brain and said:
Dr.: Do you see that? That’s scar tissue on the outside of your brain where your brain became inflamed and was pushing into your skull and tearing itself.
Me: [silent look of absolute horror]
Dr.: And that? [pointing to a small, very light colored area farther into my brain] That’s a 2-millimeter hole in your brain.
Me: [still silent, starting to cry - not bawling or anything but definitely tears running down my face, etc.]
Dr.: What’s wrong? Why are you upset?
Me: [incredulously] You just told me I have a hole in my [expletive] brain!
Dr.: Oh, it’s not so bad. We have people come in here who have had tennis-ball size chunks of their brain torn out and they’re fine. The brain is an amazingly redundant organ . . .
Me: [interrupting] I don’t care how big it is; I don’t want to know that I have a hole in my brain!
Dr.: Well you’re actually lucky.
Me: I don’t feel lucky.
Dr.: 30% of people who have encephalitis at the stage you had it die within 48 hours.
So that’s what I was ultimately diagnosed with: post-viral, autoimmune encephalitis. They don’t think it was Japanese encephalitis, which is mosquito-borne, but rather an autoimmune response of my body to some other, undefined disease my body was fighting off at the time. Basically, the way they explained it to me is that when you’re really sick with something, you have a high fever (which I had in India) because you’re body’s trying to raise its internal temperature high enough to kill whatever organism is jacking you up. You lose your appetite and stop eating (thus my weight loss) because your body is trying to deprive the organism of nutrients and kill it that way. And if those haven’t worked and the organism is really having its way with you, your body’s tissues become inflamed – which in the brain is called encephalitis. I’m not clear on how your tissues becoming inflamed is supposed to help kill of the organism – or maybe it’s just something that happens to you as a result of it or whatever – but that’s what happened to me.
So it’s not a major problem for most tissues to become inflamed – but the brain is obviously encased by skull and has nowhere to go, so when it becomes inflamed, it pushes against the skull and scars and tears itself, which is what I was unfortunately dealing with.
So after all of the testing, etc., my question was obviously “Ok, what do we do about it now?” Unfortunately, their answer was there’s really nothing we can do except hope it gets better. A little while after that original round of examinations and diagnosis, they sent me to a “neuropsychiatrist” – which I didn’t even know was a job. I took two days off of work and had to go in and do a battery of tests to determine how badly the brain damage I’d sustained had affected my motor skills, memory, auditory ability, etc. One test was I had to reach through a curtain and feel a block and then draw the shape of the block on a piece of paper based on how it felt to me. Another test was the doctor would read off a long list of numbers and I’d have to recall as many as I could in the proper order. I also had to wear some headphones and detect which ear the beep was occurring, etc., etc.
The end result was the neuropsychologist said he didn’t doubt that the brain damage I’d sustained had diminished my abilities, memory, etc., in certain ways, but that I was still a relatively high-performing individual and wasn’t “disabled” or anything. I mentioned the auditory hallucinations – which I was still having at that time – and he told me that auditory hallucinations were actually common after damage to the cerebral cortex – which is what I’d had.
I then mentioned the deja vu experiences to him, and he told me this: “I’ve been a neuropsychologist for 25 years and I have seen a lot of things I can’t explain. I am not doubting that what you’re telling me occurred, and at the same time I’m not telling you that they were some sort of paranormal events. There is probably a rational explanation for them, but I honestly have no idea what that might be. The brain is a very odd organ. And yours is perhaps the oddest such organ I’ve ever observed.” Ok, he didn’t really say that last part about mine being the oddest such organ, but he did say the rest of the above. I think. I really can’t remember. Just kidding.
Anyway, the bottom line according to the neuropsychologist was that I would probably continue to struggle a lot until approximately 12 to 15 months after I got back from India, but after that I should start to see dramatic improvement. And that’s exactly what happened. Right around the 12 to 15 month mark, I did finally start to feel better mentally. Not 100% – and I don’t think I’ve ever gotten back to 100%, but a lot better. I could see marked improvement for a while, and then it kind of slowed down and plateaued and that’s where I’ve been for the past 11 years. (As a sidenote, I also learned a couple of years ago when a girl I was dating and I decided to get tested for STDs – which is whole other funny story I’ll have to tell sometime – that I had had hepatitis A in the past. I didn’t have it anymore – but my blood showed the markers or antibodies or whatever for it. I am sure it was when I was in India because one of the symptoms is jaundice and my skin was definitely jaundiced when I was sick in India.)
So while the mental/memory issues improved, the digestive issues were a whole other matter. They remained serious enough that I finally had no choice but to get over my embarrassment and go to see a doctor. And then another doctor. And another. And another. I would imagine that over the past 11 years I’ve seen more than 30 different doctors. And they have ranged from traditional M.D.s like infectious disease specialists and G.I. doctors to “alternative health care professionals” like kinesiologists, herbalists, Chinese medicine practitioners and other holistic type “healers.” And I’m not knocking all forms of alternative medicine – I’m open to it, as you’re about to see. I think some alternative treatments are helpful – but I also think there are plenty of quacks out there who prey upon people’s pain and desire to be well. I would imagine that I’ve spent between $10,000 to $15,000 (and that’s being conservative – it could be more) on various supplements, treatments, etc., over the years. Ultimately, in March 2005 I took 4 days off of work and went to the Mayo Clinic in Jacksonville, Florida for four days of extensive testing.
The bottom line was that nothing ever really worked to treat my problems and no one ever even had a real answer as to what they were or what was causing them. I was told on numerous occasions that I had “irritable bowel syndrome” – but to me that is no different than someone telling you “we have no idea what is wrong with you.” Diagnosing someone with IBS is like saying “you clearly have some general digestive issues but your tests come back normal and we can’t figure it out so we’re just going to call it IBS and tell you to live with it the best you can.” I felt that was bullshit – especially in my case since it was so obviously – to me at least – likely tied to my getting sick in India.
The best “guess” I ever got came from a doctor at the Mayo Clinic, who said he didn’t really know what was wrong for sure, and that he couldn’t prove it but thought that either the encephalitis I’d had had also damaged some nerves in my digestive tract in addition to my brain, or that some parasite I’d picked up in India had damaged the nerves in my digestive tract over time. But he said that he didn’t know of anything that could be done about it and the damage was probably permanent. “Learn to live with it,” in other words.
So that was disheartening – I mean if the Mayo Clinic tells you they can’t help you, who likely can? – but I kept trying to figure out something I could do because it was continuing to adversely affect the quality of my life. So about a year ago, I went to this quack in Atlanta – and this guy really was a quack and I knew it going in. I went it to him for one purpose – because he was listed as a registered provider for this company based out of Asheville, North Carolina that does very comprehensive tests of digestive function. I told him when I went in that that’s all I wanted done, and he still tried to sell me all kind of “treatments” – from having the fillings in my teeth removed to having certain vitamins administered intravenously, etc. I said no thanks, I’ll stick with the comprehensive test and that’s it.
So when the results of that test came back, they were negative for everything except for one thing: I had high levels of blastocystis hominis, which is a single-celled intestinal parasite. Most traditional doctors don’t consider blastocystis hominis to be pathogenic – in other words it doesn’t cause problems for most people even if they have it. But when I started to research the symptoms people had who were affected by it, they were almost identical to my own. One thing that was especially telling to me was that when I was at the Mayo Clinic, they told me that I had very low levels of “eosinophils” – which are certain type of white blood cells – but they couldn’t explain why. Well one of the symptoms of people who were affected by blastocystis hominis was a low eosinophil count.
So I became determined to get rid of the blastocystis hominis to see if that would help my condition. Here’s the bad news: It’s extremely difficult to eradicate. It has multiple life stages – vacuolar, granular, cystic, and amoeboid – so you might take a drug that would kill all of the amoeboid stage organisms, but the cystic stage organisms might survive, etc.
Ultimately, I found some Australian website that said that an Australian doctor had figured out a combination of very strong antibiotics – two of which are not even legal in the U.S. – that could successfully knock out blastocystis hominis. There were a lot of testimonials from people who had struggled with issues similar to mine who had experienced a lot of benefit from taking the recommended antibiotics. I realize it probably sounds crazy for me to even consider taking drugs like that based on some random website and without medical supervision, but you have no idea how desperate I was to get rid of whatever was causing my problems.
So I ordered the four following drugs from a Mexican pharmacy: Nitazoxinide, Secnidazole, Furazolidone, and Doxycycline. Once I received them (the first shipment to me was intercepted by the U.S. FDA at the Miami airport so the pharmacy had to resend), I took them as a cocktail for 10 days. Also during the 10 days I couldn’t eat any sugar or carbs at all – which was supposed to deprive the blastocystis hominis of nutrients while it was under attack.
Amazingly, after 10 days during which I felt like complete hell, I would say my condition had improved to about 70 or 80%. And even more amazingly, it has stayed at about that level. It’s still not perfect, and I can only guess that after 10 or so years of parasitic infection, I probably did sustain some nerve damage as the Mayo Clinic doctor suspected (or I had already sustained the nerve damage as a result of the encephalitis itself), and that may never go away. My primary symptom now is just chronic, low-grade abdominal pain. I can best describe it as feeling like I constantly have a bad headache in my gut – it’s constantly painful and it never goes away. It definitely affects my mood, motivation level, etc., but I’ve learned to live with it and ignore it the best I can. But after experiencing the partial success with the antibiotics, I’m even more determined to try to figure out how to get rid of my symptoms completely.
Which brings me to the point of this post (which I never intended to be this long – or to tell so much of this story): Earlier today I went to a chiropractor/acupuncturist here in HCMC. I met him at the California Wow! (!) press conference the other day (in between the Thai dance squad and Master Kamal (!)), but I had actually heard about him before from a doctor who works out at my gym.
I have been really into trying to reduce my stress level over here – thus the meditation, etc. – as I have always felt like stress exacerbated my problem (which is why it was probably a really good idea for me to work as an attorney in a big law firm environment for 10 years).
Anyway, the chiropractor is a very interesting guy. When I started telling him about some of my issues – he told me that he could relate in a way. When he was in the 10th grade, he was playing football and broke his back. He spent the next two years in a rehabilitation center with no bowel or bladder control as a result of being partially paralyzed. Even after he regained that control, he had continuing digestive problems going forward. After three or so years, he was leading an outdoor education/survival school for troubled youths and was bit by a rattlesnake (!). He almost died, and something about that traumatic experience caused him to release all of the stress and tension he’d been holding inside – and after that experience he never had digestive issues again. (I quickly told him I was not down with being bitten by a rattlesnake.)
Anyway, his life since then has been very interesting. He’s a mountain climber – and I mean big mountains – he hasn’t climbed Mount Everest but he’s climbed a lot of other really big mountains, knows Jon Krakauer, etc. Once he went on an expedition into Tibet to find an almost mythical “lost tribe” of indigenous Tibetans, during which his expedition was arrested and held by the Chinese government for a month. When they were released (after trying to escape once, being caught, and having the hell beaten out of them and fearing for their lives), everyone on the expedition – including the doctor (he is an M.D.) – had dysentery, and everyone but the doctor decided they couldn’t go on. The doctor snuck back into Tibet (I guess at that time it was illegal to even enter Tibet) and went and found the tribe by himself. He was the first white person they’d ever seen, etc. He was very interesting to talk to.
So I went to see him today, told him my story, and told him I was primarily interested in acupuncture as a stress reduction method. He listened to me and told me acupuncture could certainly help reduce stress, but he said that it sounded to him that what could be causing my problem was chronic inflammation that my body could never quite heal. He said there are ways to break that cycle, allowing the body to heal, and that if you can keep the inflammation at bay long enough, the body can actually heal and stay healed. I told him I was game for whatever, so here’s the deal:
He (actually his Vietnamese nurses) hooked me up to a machine that administered “microcurrent” and “IF current” to my abdominal area for a total of 20 minutes. I couldn’t feel the microcurrent at all, but the IF current made the muscles in my abdomen twitch very quickly – it was almost painful but strangely felt kind of good at the same time. I had this done once before in Thailand in 2004, but at that time the current was administered via acupuncture needles, not adhesive pads as it was today.
After that, he did some pressure-point type massage on some tissues in my abdomen that he called viscera (I think) – they’re basically the tendons that hold everything together in your abdomen and they have a tendency to become inflamed. When he felt them, he said that they did feel very inflamed to him, and that one in particular felt extremely inflamed to him. It so happens that the one he identified as particularly inflamed is the area in which I’ve experienced the most pain over the years.
Then I rolled over and he stuck 10 acupuncture needles in my lower back, mid-back, neck/shoulder area, and arms. He told me beforehand that he would be able to tell how much stress I carried based on how much my muscles contracted when he placed the needles in the pressure points. Most of the needles didn’t hurt at all – I could feel the little prick of the needle and the weird, almost electrical feeling twinge you get with acupuncture – but when he stuck the two needles into my neck/shoulder area, they hurt like hell and the doctor said “Wow, you are really carrying a lot of stress in your shoulders.” I told him that that was not really news to me, and he said “I mean, a lot more than most people.”
He also did a few chiropractic maneuvers on me – which I’d never had done before – like some back and neck cracks, etc. (I don’t even think they were related to my condition – I think chiropractors probably just have to do them to everyone so that they feel like chiropractors, etc.)
Anyway, my neck/shoulder area has been extremely sore – painfully sore – all afternoon and still is. The needle only slightly penetrates the skin, so the soreness can’t be due to the needle itself – it’s got to be the result of the muscle contraction or whatever it is that acupuncture does. Also, I felt kind of loopy and out of sorts right after the acupuncture. I feel fine now, but I did feel weird for a while thereafter.
I’m going to go in for three treatments a week for three weeks and see if it helps at all. It’s not very expensive, and I figure I don’t really have anything to lose, so why not. Maybe it will actually improve my condition further – in which case this chiropractor will be my hero for life!
Sorry for the long post – I didn’t mean for it to get so long, but once I started telling the story I couldn’t stop.